Lewis Sumner Syndrome

Hi! Does anyone out there have the diagnosis of Lewis Sumner Syndrome? Apparently it is more rare than CIDP but is a variant. It is very hard for us to get information on the illness as there is only one consultant in the whole of the country that we are currently living in, so no second opinions :( I have been reading many your posts online re. CIDP and quite frankly, you are all scaring me!! We were told it was "treatable" at the beginning. However, I am now beginning to realise that may not mean "recovery". Can anyone out there give me any good news about people successfully recovering from Lewis Sumner or CIDP and returning to work and a "normal" life?

Well I can only speak for myself as far as CIDP goes, and since I've been on IVIG treatments things have gotten better. I no longer lose my balance on a weekly basis and I finally have found (or he found me) a neurologist that knows what I'm going through. I haven't achieved remission yet but that's what I'm hoping for, and how long that will take is anyone's guess. I still have my guitar and haven't given up on playing it, because with this a positive attitude is necessary. Gets better, or gets worse, I'll take what comes and deal with it when it gets here. I hope this helps you a little. Gary

Who is the consultant? Is this the same thing as MADSAM? One Dr. says yes and one Dr. says no so I don't know and was looking for another dr.

Well, the consultant is the only one available in Thailand. I think it is pretty much MADSAM, but I guess as you have said, there are probably differing opinions.



abad said:

Who is the consultant? Is this the same thing as MADSAM? One Dr. says yes and one Dr. says no so I don't know and was looking for another dr.